A day in the life of a single mom raising a teenager and a child with autism. I believe that it's not what we receive, but what we give away that defines us. I want to give away all that I have learned and experienced in hopes that it will help families raising a child with autism or any disability. This is my candid journal where I open up my world and share my joys, knowledge, lessons, disappointments, challenges, frustrations, fears and successes - one day at a time.

Monday, November 5, 2007

Diagnosis Disaster – Getting the Proper Diagnosis

Today a parent told me they had seen two professionals who had ruled out the diagnosis of autism for their 2 year old son. Their pediatrician had said don’t worry, it’s just too soon to be concerned and the results of an “Over the Phone” intake with a local early intervention agency – which included the following question “Does he line up cars?” – confirmed that he was not on the spectrum.

The parents knew something is not right with him developmentally. He is two and has routine tantrums that last more than 20 minutes, he has great difficulty with transitions, speech and other behaviors that baffle and exhaust them. Armed with the knowledge that something is wrong they were able to get speech therapy, but no diagnosis and no plan for addressing the behavioral issues.

I wasn't surprised to hear this because so many families have this story, or a version of it. It's important to know that all professionals and doctors do not know how to diagnosis kids with autism spectrum disorder (ASD). It’s important to know that only a small percentage of pediatricians use a comprehensive developmental diagnostic tool for children, there is no one tool used by all pediatricians/doctors and most practicing pediatricians do not have expertise in diagnosing ASD, especially in young children. If a child is not showing the classic signs of autism, like head banging, hand flapping and noises instead of words they can go undiagnosed. I thought I had a terrific pediatrician who could tell me everything about my child, until I called and told her he seemed to not hear me (even though I knew he could hear) he wasn’t responding when I was called his name and the only thing he wanted to these days was crawl out of his crib in the middle of the night, find the VCR and play video’s. I was worried and she said “Donna I know you, he’s just spoiled”. She was not a bad pediatrician, she was simply not trained to ASD because until recently only psychologists and psychiatrists had an understanding of the disorder.

The process of getting an evaluation for a developmental disability is counter intuitive for parents. In an evaluation the questions and our answers could make the difference between getting the right help for our children or getting nothing or delaying important intervention. We really have to pay very close attention to the questions used to determine diagnosis for our children. This is not the test where we help our child by painting the best possible picture, this is the test where our kids will get the help they need if we expose not their strengths but their weakness’s. We need for the examiner to know about the worst days and every little developmental thing that just doesn’t seem like the other kids. If we paint an optimistic parent picture filled with possibility and trying to prove our child is okay, our child could lose out on critical early intervention.

I remember being asked “Does Nicholas show interest in other children?”. Yes, he has shown interest in other children before, but no he does not show interest in other children the way I see other kids at the playground. If this were a yes or no question I would have to ignore my instinct to see the best in my child and say “no”, because they are not trying to find out if he ever did it, they want to know if he does it all the time. I was also asked if he lined things up, a very common trait among children with autism. I knew that even though he did not line things up, he constantly rewound his video’s and that was a version of the same thing, so I said “no” and clarified but he does….

Just before Nicholas’ first evaluation a friend of mine, who also had a high functioning child with ASD, told me “Keep Nicholas up all night the day before your intake. Because he will be tired he will be much more likely to act out. The last thing you want to have happen on examination day is for Nicky to have a great day and they think he’s okay or only see a little of what you see everyday. That’s not good they need to see the behaviors that got you there and no sleep usually helps with that”. I took her advice and it helped Nicholas was frustrated and in the small time allotted for the examination, he showed them exactly what they needed to see to confirm he needed help.

Notes to myself and others....

l. Get an evaluation from a trained professional, not a general pediatrician

Locate a developmental pediatrician, a psychiatrist or local autism clinic and request an evaluation.

2. In the future if anyone is going to consult, diagnose, advise you regarding your child make sure that they have the experience diagnosing children with developmental disabilities’ – and that they are presently up to date with the new information regarding ASD.

3. Before any evaluations go online to the CDC website and review the developmental guidelines they have that posted. Reading this information first will give you a chance to see important milestones and think about your child’s progress before an evaluation. It will help you to be confident and prepared to ask questions or better answer their questions. www.cdc.gov/ncbddd/autism/actearly

4. Make a list of all of your concerns before your evaluation and share them with the doctor or intake specialist. Don’t worry if they seem to fit, or make since to you, just write out everything that concerns you. The specialist will determine which merit further investigation and which are just normal kid stuff.

5. Follow your gut, no matter what the professionals tell you until you believe you have found the truth.

6. To help our children get an honest evaluation we will have to go against what we all do naturally as parents, paint the best picture of our child, and explore their weakness's